Inoperable decision -

IanT 23 hours ago

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4 weeks ago I wrote that I had been diagnosed with an 8cm tumor following an endoscopy and biopsies.

The next day was a CT, followed by a call the week later from the surgeon confirming adenocarcinoma but saying they are provisionally planning for chemo, surgery and chemo based on what they can see, but I will need a PET to confirm no distant spread as the CT can sometimes miss things.

Today I was invited to meet with the surgeon at 8am to following the MDT and PET results.

I was thinking this is good news, the plan is going to be confirmed as I'm seeing a surgeon, only to be floored.

The PET is showing a lymph nodes in the neck at 2.5cm, behind the supraclavicular. This is considered distant spread despite no spread to any other organs, meaning T3, N0, M1. Stage 4 (Inoperable).

I'm devastated. Initial plan now is Folfox chemo, with immunotherapy (I think she said Nivolumab) as I'm PDL1 positive (35) but Herceptin negative.

I need to wait 2 weeks to see the oncologist, and probably 4 weeks before any treatment will start. It was the clinical nurse specialist who mentioned this.

I'm completely devastated again, after thinking there was hope I'm now considered Stage 4 at age 48 and otherwise totally fine..

I'm considering a second opinion, I've every faith in the specialists at the hospital but a different team and set of eyes never hurts or am I wasting time, alienating the current team and risking slowing things down further?

I was convinced surgery would be my route and back on a state of numb disbelief that I'm now facing a much shorter existence in this life with my family. I'm just lost..

Pma88 21 hours ago

Hi IanT

Very similar experience to you - had all tests / laparoscopy / met surgical team to discuss surgery two days later had to have a US as some activity which had showed up by thyroid on pet. As thought might be connected plan changed to nivolumab + capox. Am also dmmr.

After initial shock at change of plan after getting my mind round the major surgery option I actually felt positive about the change.

Reading about this option for my genetic markers (same as you I think) there are some really positive things about this treatment I don’t think it rules out completely surgery at all later date. Unless you have mets it seems to be currently only given after a recurrence after surgery so to my mind it’s good to have it prior and am keeping a pma that it’ll work wonders.

There are also advances all the time so try and take one day at a time.

The waiting to start treatment is a very difficult time but becomes easier when you start.

I’m in the middle of second cycle (6x 21 days… then just immunotherapy ongoing). So far so good no major issues bit of tingling on cold and tummy upsets. I can eat normally but try and eat smaller amounts more often and things to keep up calories learning as I go what foods to avoid to manage any issues.

You certainly aren’t alone and there are loads of really kind people on the forum offering advice and positivity.

I hope your wait to start isn’t too long.

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